I was diagnosed with CM in May 2012, and had an SVT ablation in 2004. I read somewhere that people with CM often have heart arrhythmias like SVT, but I've not been able to find any reputable source to substantiate this...everything is on blogs posted by non-medical personnel. I am experiencing new heart arrhythmias. As my old, fantastic cardiologist is now deceased and I am in a different city now, I have to start over with a new cardiologist. This one seems pretty clueless when it comes to Chiari.
I've been watching this blog for over 6 months now, and am hoping that Selma or someone else might be able to point me in the right direction so that I can educate my doctor. As frustrating as it is, I'm willing to help my doc put all the pieces of the puzzle together.
Heart issues can be associated with a few of the related conditions of Chiari...POTS. and Ehlers-Danlos could be associated with heart palps and other heart issues....were u checked for these?
Another issue could be GERD, as it can affect the vagus nerve and cause the heart issue as well...I had this b4 surgery and since I do not....I do have GERD and a hiatal hernia as well as EDS, and TCS....so when we have several related issues going on it can be difficult for Drs to connect the dots.
No one has mentioned POTS, EDS, GERD, or TCS (yet). I've watched how much you help people at this site despite all the challenges you yourself are facing, and feel that you are truly inspirational. This site is truly lucky to have you and I hope you always continue to support it.
I'm still in the phase where the docs are trying to tie my neurological symptoms to anything but the Chiari. I would LOVE for the doctors to find a different root cause. However, I'm pretty in tune with my body (I have two kids that are 2 years and 1 day apart and have never been on birth control during my nearly 2 decades of marriage), I'm not on any medication (not even birth control), and all the "little things" that I've observed over the years that are wrong with me now make sense given my Chiari condition.
I've gone from wanting surgery immediately to never wanting the surgery to my present position, which is to get the surgery if a syrinx or pre-syrinx develops, or if it can be determined that my heart arrhythmias are being caused by the excess pressure on my brain stem.
I've been wondering how medical advances in Chiari treatment in other countries compares to the U.S. Not being fluent in other languages, I'm not sure how to go about researching this. I have heard that Germany is very advanced in neurology. My spouse is military and an overseas trip may be in our future. If I find anything positive out, I'll post it.
My 2004 ablation was life changing...made a big difference. The arrhythmias I'm having now are different - bradycardia (slow heart rate) followed by tachycardia (fast), and the minimum brady rate was zero - showed up on my sleep study. While I'm not qualified to diagnose myself, I suspect it's a condition called sinus pause. Sinus pause can be caused by prior heart surgeries...when I asked my cardiologist about that, he said it would have shown up pretty soon after the ablation. I've read that sometimes they don't perform an ablation if the pathway being "fried" is too close to the SA node, the heart's natural pacemaker. Having watched my father go through his various electrocardiac issues (and I suspect undiagnosed CM as well), I won't hesitate to get an artificial pacemaker if I need one. The surgery is super easy and so is recovery.
Wow - the "all I have to do" part seems so overwhelming. I used to have good insurance, and now I have my husband's military insurance, which means it takes forever to get an appointment with a specialist, and the list of doctors to choose from is not impressive. My best friend from the city where I used to live is a hospitalist, and she used to give me advice where to go...see Dr. A, B, or C...she would say. None of them were on my list. Well, different approach - DON'T see Dr. X, Y or Z. All of those were on my list. Sigh. I'm going through the motions with these bottom doctors to get my tests run, and my plan is to collect all the information and take it to a reputable doctor for a second opinion, which will likely be out of pocket.
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